The Wind of Autism

Like a sunrise I didn’t know I needed,
you marched into our life to make your claim.
Your silent words I should have heeded,
delays past milestones, red-flags everywhere.
Your eyes expressed when words failed.
The simplest thing could trigger a storm.
I pulled every trick I could until you sailed
back to the moment, back to me.

As my heart aches, helpless to you.
You wrap your arms around my neck
Thaws my winter chill, I feel anew
Ready once again, to chase your seasons.

My Autism Confession

It is 3:45 am according to my ancient clock radio. My youngest daughter drags my right hand to pull me out of bed. She leads me to the gate at the top of the stairs indicating she wants to go downstairs. I slide on my eyeglasses to see as we try to sneak downstairs to not wake the other members of our family. In the dimly lit living room I struggle to keep my eyes open, to keep her safe and hopefully wear her out to go back to sleep. Without an eye on the time, eventually she stretches out on the couch. I try to get comfortable in the chair near her. Just as soon as I rest my eyes I hear my husband moving upstairs in our room. I check the clock, with a heavy sigh I realize he is up for work. The day begins with me in slow motion.

Shortly after he comes down the stairs, our oldest bounds down wide awake. After he leaves, my youngest is still awake. I realize that I need to do something desperate for her to sleep before our morning activities. Despite my exhausted self, I pack up my girls in the car in hopes a long drive will help make her nap. In three hours we are expected at a medal ceremony at the local library for the Summer Reading Club. My oldest has been looking forward to this all year. There is no way I am going to miss that for her. If I wasn’t so tired I would be angry at the situation. In a ‘regular world’ there would be a grandma on call to do this so I could cat nap. Autism robs my brain and energy again.

I never asked to be a mom. Years of not trying to be a parent lulled me into a sense of child-less security. Because of my medical issues (endometriosis) it was presumed that I could not conceive. In fact, three doctors confirmed it. To the date three months later my first daughter was conceived.

I delivered a beautiful baby girl. As she grew older, hitting her milestones, I became relieved. She is on her way. She never crawled though. She ran the week after her first birthday; all the while talking a million miles a minute.

Months later when she was 14 months old, I was stunned again that I was pregnant. I even went to the store in my pjs to confirm the test three times.

This pregnancy was not like the last one. The morning sickness was awful. I began to lost weight so I needed to take Diclectin to start gaining weight. I took my iron and other supplements the doctor instructed me to do. The rest of the pregnancy dragged on as I tried to keep up with a fast toddler.

Then the 28th week of pregnancy hit as my belly measure 8 inches longer than it should have been. They questioned me if I was sure of the date. I assured them I knew. Through ultrasounds with a specialist it showed that my baby was breech and practically standing in my womb. The baby was also going to be big according to the scan. So a C-section was scheduled.

I know I have a lot to be grateful for: healthy family albeit autism, my sister lives close and I have a writing career I love. The ‘experts’ keep going on and on about the importance of sleep. Well, that is great and all, but what happens if it is beyond your control.

Within minutes of our drive, my oldest girl tells me her sister is asleep. I tuck the car into a drive-thru line-up. In the rear-view mirror I see my five-year-Old’s eyes light up. I order our food and park under the shade of a tree. I leave music on and begin to have a breakfast car picnic with my first baby. She states that this is the best fun ever. With those precious words I slip out of my self-pity baggage. I did what I could do and ended up making a special summer memory for the two of us.

The following week my legs are splayed over the coffee table. I reach over to my abandoned coffee cup. I carefully take a sip to only find out it has gone cold. With a big sigh I get off the couch to dump the remains into the sink. I step aside my three-year-old daughter who is racing around the dining room and into the living room. Her Santa hat goes flying in the air as she turns the corner.

I refill my coffee cup and amble to sit down again. We had just returned from a doctor’s appointment after dropping my oldest daughter off at kindergarten. My youngest is beginning the steps to have therapy to help her autistic behaviours. She was also up very early this morning. The weight of the sleep and stress exhaustion makes me grumpy. I kick a toy to the side and sit down again.

For the past year I have witnessed my girl grow slowly through the development milestones. Her speech is also delayed. We began the search for the right programs and therapies after the assessments that diagnosed her with ASD (autism spectrum disorder.) For some reason she is deciding sleep is not an option lately. The constricting guilt of if I am at fault as to why she received the label keeps me up at night. I wonder if it had to be me being put under for her birth. The planned caesarean was hampered by my back not able to receive the spinal tap or epidural. Her big size didn’t help. I wonder if I didn’t eat something I should have while pregnant. I had seven months of morning sickness while pregnant with her. And once again, like a million times before, when I start going down this road I cry.

I hear her giggle bounce off the walls as she rounds the corner to run through the rooms. Her senses love certain textures and movement. So she is wearing her Santa hat and a ballet tutu for the sixth day in a row. Since she is three, we allow her the happiness the ensemble gives her. When she is sixteen it might not look so ‘normal’ at school. She runs around again only this time to barrel towards me. I open my arms to receive the biggest bear hug. Her hat comes loose. She hands it to me so I can put it back on. She bounces up again and is off. My guilty reverie fades as her hug reminds me of one thing, she is my daughter. I am lucky to be her mom. She is the present I did not know our family needed.

 

In Your Face #Autism

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The blood is racing through my body to the point I think it is going to burst my veins. My hands grip the shopping cart handle as I whisk us away from the older man. I feel light, euphoric even.  Surreal does not even begin to describe it. For once, I said the right thing at the right time.

Minutes ago my four-year-old raced ahead of me in the grocery aisle. She accidently bumped an older gentleman’s basket. He was not hurt at all. I caught up to her as she raised her arms to indicate for me to pick her up. I scoop her into the cart. The man that she bumped came up beside me and grumbled that those kids should not be contained but punished for what she did.

Without taking a breath I looked at him and said, “ Did someone teach you to be an asshole or does it come naturally?”

Walking away, I am stunned at what I said. For years since my youngest was diagnosed, I bit my tongue when ignorant comments or unsolicited advice would be dropped in front of me. I am not trying to be on a soapbox and make everyone be aware of autism and it’s many gifts and challenges.  All I ask is that she be given the same respect as others expect her to give them.

I do not swear or call people bad names very often. I want to show my kids that mom does use her words. In this case, I do not regret standing up for my kid, who doesn’t know how do that for herself. Ironically, I did not see that man as we finish our shopping. I pack up the car and buckle her in. She gives me a big kiss and hug. Her direct eye contact is a new gift. Maybe she knew what happened just now and she is thanking me in her way. Never mess with a Mama Bear. In your face Autism.

Compassion and Autism: Uniquely My Kids

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I am leaning over my six-year-olds toes to paint them a bright purple. We just got back from the mall on a special mom and daughter date, from where we bought the nail color. Her fingernails are adorned with the gorgeous color. I am almost finished her left foot when the door to my bedroom is pushed open with a bang.

In marches her four-year-old sister, sits down next to her sister and sticks out her hands. The simple gesture makes my heart burst. This is such a ‘regular’ moment of a younger sister wanting to be like her big sister. For my youngest it is huge. She was diagnosed with autism over a year ago. Her delays have kept her behind on ‘regular’ kid stuff for a long time. Until now.

I apologize to my six-year-old that our date was interrupted. My hubby is nearby, ready to see where this goes. My beautiful date says it is okay and tells her sister to hold still. Everyday, my girls delightfully surprise me with their compassion for each other and uniqueness of their own individual selves. I proceed to paint her nails too as my hubby snaps this special picture.

Their nails dry fast and we go downstairs for a special treat of a Kinder Egg. I do not know when the next unique moment will be. Autism keeps us guessing. I am so grateful to be here to see each one.

With spring in full swing and summer fast-approaching, Kinder Canada is very excited to help you get to know the new egg in town – Kinder® Surprise® Pink, with over 30 new playful toys inside. They have added a brand-new section showcasing some of the new toys in the Toy Gallery on Facebook, where you can browse the new collection and vote for your favorites.

Kinder Eggs

To celebrate the launch of Kinder® Surprise® Pink, Kinder Canada will hosting an exclusive Facebook contest. Starting May 29th, for three weeks, you will be able to participate simply by becoming a friend of Kinder Canada and telling Kinder Canada what makes their child so unique! YOU could be lucky enough to scoop up one of three $250 VISA gift cards! Contest will be live from May 29 to June 19.

Disclosure: I’m part of the KINDER® Mom program and I receive special perks as part of my affiliation with this group. The opinions on this blog are my own.

I am Humbled and Honoured to be Nominated

Top BloggerA few weeks ago after nominations for Vancouver Mom Top Bloggers were sent out, I found out through the grapevine that a few loved ones had sent in my blog for consideration. Well, last week I was short-listed.

I have been given amazing opportunities because of my writing that have been priceless, and have had the privilege in meeting many fabulous people.

With readers like you I feel like I have achieved so much, and can’t wait to see where my proverbial pen takes me next.

If you would like to vote for me, click me on the link and vote for Motherless Moments.

Thank you.

Sincerely,

Danielle

If you are in town and want to join in on the party on June 19th, register here.(link)  Use code 2013friend to save $5.00 off of a regular ticket. See you there!

What to Say and Not to an Autism Warrior Parent

I know I should have thicker skin when it comes to snide remarks. I know I should let it roll off my back. I know I shall expect it again. It makes my brain go into what people should say. They are:

5 things Not to Say to an Autism Parent

  1. Everything happens for a reason.
  2. At least the child is healthy.
  3. That must be tough.
  4. Can’t you control your kid? ( or the nasty glances.)
  5. I don’t know how you do it.
  6. This kid is born to you because you are strong and can handle it all.

5 things to say to an Autism Parent

  1. How are you?
  2. Can I babysit sometime?
  3. Your kid is wonderful/smart/delightful.
  4. The world is a better place with your kid in it.
  5. _______________________________________

I wish to put this on a laminated card to hand out when people approach me . I wonder what the fifth thing that should be on that list.

What would you say to a parent with a child on the spectrum that is positive?

The Wind of Autism

Like a sunrise I didn’t know I needed,
you marched into our life to make your claim.
Your silent words I should have heeded,
delays past milestones, red-flags everywhere.
Your eyes expressed when words failed.
The simplest thing could trigger a storm.
I pulled every trick I could until you sailed
back to the moment, back to me.

As my heart aches, helpless to you.
You wrap your arms around my neck
Thaws my winter chill, I feel anew
Ready once again, to chase your seasons.

A Twiggly Tweet Made My Family’s Day

 

I am trying so hard to not give up. After talking with my family we decided that I would take our sweet youngest girl to see The Wiggles. When we tallied the cost for all four of us to go we decided it would be just us two. With her sensory issues and non-verbal words, The Wiggles are rock stars in our house. The concert will be one week after her birthday. It will be the perfect gift.

So I open my computer to search online the best seats for us. After trial and error at live events I know that I need to find something close to the stage and  an aisle seat as she tends to want to run. I could not find anything that would be appropriate at the venue. I decide to step away and think about if it was really worth it.

The next morning, I search again. I cannot find anything appropriate to make the concert a success for us. I take to Twitter to ask The Wiggles if there is anything they can do to help. Much to my surprise and delight they answer me back requesting me to email a certain address.

With trepidation, I email Chris at The Wiggles office explaining our story. I hope that they can tell us of better seats. What happens next seems like a dream. Chris sent me a voucher for 4 tickets and passes to Meet and Greet The Wiggles!!! I had to look at it several times to see if it was for real. We decided to not tell the girls until we arrive at the show. I am stunned at the compassion and kindness that Chris and The Wiggles for giving us this great gift.

Here is the voucher for the October 28th show.

An Angry Letter to my Mom

Dear Mom,

I am so sad, mad and upset at you.

After years of being scared to have kids, in fear of them inheriting genetic baggage, my deepest fear has come true. Since my youngest daughter was born, her delays have been obvious. Then the diagnosis of Autism arrived. All this time I have been riddled with the guilt that I am at fault for her delays and diagnosis.  I have second guessed everything that happened from the morning sickness to having to be put out for her birth.

Then earlier this year my sister, your youngest, was found to have a rare chromosome that was linked to her cancers. Because of that, my baby and I have been tested due to that connection.  Today I got the call that we tested positive with links to my health problems, and my sweet baby who has autism and a big head. All this time I blamed myself that it was my fault for her social and development delays.

All her and I did was be born. It does not ease my pain that it might not be my fault. She inherited from me, and I from you. We were born. End of story. I know that if you were here today we would find out if you had the same mutation of the gene. Statistically it had to be from you. But who did you get it from? I have a million questions for you. Life has thrown my small family too many curveballs. Why are we the ones with the genetic baggage, and not the rest of the family?

It is so not fair. Cancer is a bitch.  I can never imagine life without both my babies. Autism has had its hard days. It has given us moments that remind us with what is really important.

Family.

I wish you were here.

Love, Me